Sara Watkins takes us through some hacks to make your house work for you as a spoonie, as opposed to battling uphill against it.
(Photo by Brooke lark on Unsplash)
[Image: a set up on a kitchen table with forks, a baked berry pie and apples strewn on a grey table.]
When chronic illness impacts your ability to live a normal life, one of the most overwhelming parts is figuring out how to do daily tasks in a way that doesn’t leave you burned out or in pain. Even simple household chores can be difficult, and it’s not like you can run out and buy How to Function as a Chronically Ill Person for Dummies. (Trust me, I looked as soon I was diagnosed with UCTD and other fun acronyms.)
Usually, we figure out our own “spoonie life hacks” as we go but, because the symptom spectrum is vast, this can look a little different for everyone. There’s this unspoken stigma that a lot of us feel when adjusting our lives to our needs, and that’s unfortunate— it’s important to talk openly about this very real part of our lives. Always one to put my money where my mouth is, I connected with some wonderful people across the chronic illness community to discuss how we (unconventionally and affordably) make our houses work for us.
I hate to admit it, but I struggle with laundry. My life in the bedroom (not that one!) changed when I ditched my dresser for a cube organizer. Instead of spending hours folding laundry and hanging clothes, then icing or heating my aching muscles, I just throw everything into one of nine cubes now. The cubes are organized in a way that I like, so I always know where to find what I need. When it’s time to wear them, a quick spritz with a spray bottle and a tumble in the dryer removes the wrinkles.
But that’s just clothes! What about the bed? Larisa Fan (ME/CFS) suggests strategically placing pillows on top of the comforter to keep the bedding in place when sleeping alone. This way, you only need to make your side when you wake up.
Combined with my “ditch the dresser” idea, I ditched the hamper. Dirty clothes go into the wash as soon as they’re done, and the wash goes on when it’s full. Hampers now exist only to shepherd clean clothes back to their cube.
If you don’t use my cube trick, D. Savannah George (h/EDS, dysautonomia, and more), suggests sitting down to fold laundry. Sitting down is never a bad idea, even if you feel like you “shouldn’t have to.” Anna Eskanazi Bush (chronic Lyme, fibro, and more), says that if you’re not sweating in it, don’t feel bad about wearing it again… especially if no one saw you. I say, even if they did see you and they say something rude, ask them if they’d like to do your laundry for you...
Quite a few spoonies swear by shower chairs— if you have the means, these are great. If you don’t, and if you’re able to comfortably get down and back up, baths are good option. If you find yourself heat-sensitive, Larisa suggests using a bath thermometer to ensure the water temperature won’t leave you dizzy. If you must shower standing up, Anna suggests keeping your head and elbows pointed down; this helps to keep your heart rate low.
When you’re really not feeling well, even brushing your teeth is a chore. I keep two
toothbrushes in my bathroom: one by the sink and one by the shower. Just standing for too long can irritate my muscle spasms, so brushing my teeth while I’m already standing around waiting for my conditioner to work its magic can save hours of pain.
If you’re acquainted with neuropathy and having your feet fall asleep on the toilet, you may want to purchase a squatty potty (of any brand). If that’s not an option, kick over the trash can and rest your feet up there. It’s a lot less painful than burning toes.
If you’re chronically ill in the kitchen, you may as well fall in love with slow cookers says Tammy Stephens, (Lupus [SLE], epilepsy, and more.) Larisa and I agree with her. If you’re struggling to make healthy, filling meals, a crock pot with frozen or pre-diced veggies, broth, and pre-shredded chicken is a delicious soup. Frozen meatballs from most major grocery stores are delicious after 4 hours on high. It’s important to recognize that you may not need to rely on this kind of cooking all the time, but that it’s there when you need it. There is nothing wrong with eating “easy” food for dinner.
In fact: congratulations! You made dinner.
While we’re on the topic of eating, Maeva Wunn (multiple sclerosis, trigeminal neuralgia, and more) suggests large silicone straws for drinking. These are typically reserved for boba tea, but they can make a world of difference for jaw pain.
No matter who I spoke to, everyone seemed to agree on a few key things: go slow, take lots of breaks, use visual cues like post-its and trackers to navigate through the brain fog. You can also DIY mobility aids as necessary, such as a dedicated “chore chair”: a chair to stir the pot while cooking in the kitchen, a chair to fold laundry in the bedroom, etc. Laitie Montai (hypothyroidism, PCOS and more) recommends upping your sit/stand game by switching out that room-dedicated chair for a rolly chair. Be careful with this one if you struggle with balance! If you do, Savannah suggests that it’s a bit easier to keep your balance if you utilize plastic mats in areas where you are most likely to stand while doing chores.
So, remember: Do things in small amounts at whatever pace you need to; don't be afraid to sit down, look weird or approach things unconventionally; and use lots of whatever kind of reminders work for you— visuals tends to be the fan favorite.
Sara Watkins (she/her) is an editor, author, UCTD-haver, and the editor-in-chief of Spoonie Press, which is devoted to publishing work by chronically ill, disabled, and neurodivergent creators. She is the winner of the 2022 MASKS Literary Magazine Story Award. Recent publications include work in Wordgathering, Vast Chasm, and Bitchin’ Kitsch. Contact: www.sarawatkins.net or @saranadebooks on Twitter and Instagram.
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